I'm a newbie.

[RattieLady]

I was diagnosed with NF2 in October 2002. Just before my 21st birthday
In late 2001 i had lost the hearing in my right ear, my GP told me i was fluid behind the eardrum come back in 3 months. I went back after 3 months and was told the same thing, and this happened for a 3rd time, so after 9 months i was getting worried. Then out of the blue i got a letter from Basildon hospital asking me to come for an MRI scan. So i did. Then a few weeks later i got another letter asking me to come a see a doctor. I saw him but he said that here where tumours inside my head. At 20 i was scared. I was told that there was a consultant at Addenbrokes hospital in Cambridge that specialised in thing like this. So a few weeks later i got another letter but this time it was from Addenbrokes asking me to come to their ENT clinic. There i was told that i had NF2. I've never in my life cried as much as i did that day. Awhile later i had further MRI scans on my whole body.

In January 2004 i had my first ever operation. I had some tumours removed from about half way up my spinal cord. At last i was pain free for the first time since i was 16. In August 2004 i had a tumour removed from the back of my right hand. In January 2005 i had the first AN's removed from my right side and was fitted with an ABI. But they didn't find one tumour they found 4. One was on the facial nerve. The tumour was wrapped around it so bad that they had to remove the nerve leaving a small amount of nevre either end for future surgey. Beging of May this year i had the facial nerve conectted to a nerve thaat controls the tongue and i had a 2 gram gold weight put i my eyelid. Now i've lost the hearing ing the left ear. I have no balance on my right side. I still have an AN on my left side, more tumors on my spinal cord and in the centre of my brain.

I'm finding it hard to come to terms with this because i've never had a single thing wrong with me as i was growing up, never been in hospital. I'm the only one in my family to have this. If my fiance and my family wasn't here to help me the best way they can i don't think i'd be here.

[Battyp]

Rattie welcome to our club and so sorry to hear your story.  I can understand where you are coming from if it wasn't for my son and mom I don't know that I'd still be here.  It's all so frustrating and overwhelming at times! I know for me it helps to know I'm not alone in this journey so hopefully you'll get some comfort from our exclusive club!   

[RattieLady]

Thank you Battyprincess. It's nice to know i can talk to other people with this. I should fit in nicely

[ppearl214]

Hi rattielady and welcome.  I cannot share experiences as I'm not NF2 (hearing more and more NF2 here and hoping the site admins will also help merge info for all NF2 patients into one forum for ease of access of info for those of you that need it).  You are very lucky to have your fiance and family that are wonderfully supportive of you and we know how much that helps.  Like you, I was 21 when I had my very first operation, which, like you, was a major surgery (mine was a spinal fusion and lamenectomy). Was very scary for me as well... you've come to a terrific place where we all know what it is to have these darn things in our heads and such... and we serve up terrible drinks... but, we ARE here for you!

Hang in there! Good shoulders here if you need it!
Phyllis

[RattieLady]

Thank you Phyllis. I't nice to know that i can talk about this to you all.

[Gennysmom]

Welcome, love the rat, as you can see, I have more than just cats and dogs as well.

What a hard story, that's a lot to go through so young, but our main theme here is perserverence.  Whatever it is, we cry, and together figure out how to deal with it.  It's why we're so nutty in here....laughter is the best therapy. 

Kathleen

[RattieLady]

Thank you all for the welcome. You may remember this from from the top of this post.

I still have an AN on my left side, more tumors on my spinal cord and in the centre of my brain.

Well a month ago i had an emergancy operation to remove a tumor from my brain we're not sure if its the one we knew about in the centre of my brain. We won't know till i have an MRI. One of my surgeons is not happy because the hospital have not called me in for an MRI in nearly 2 years. How often should we have an MRI?

[Jeff]

Hi RattieLady,

I too have NF2. I was diagnosed when I was 36. I have had one AN removed and still have one remaining on the other side. Since the remaining tumor is large, my doctor has recommended that I have and MRI every 6 months, so that we can closely monitor the tumor. I can relate to the frustration of being diagnosed. I had never stayed overnight in a hospital until my first brain surgery. How does your ABI work for you? I got one in 2003 but it didn't work at all. The doctors said that the electrodes shifted after the surgery. So, I will get one on the other side when I need surgery. My brother got one in Feb. 2006, and his works very well. I am sorry that you have to deal with this condition. If I were you, I would be requesting an MRI every 6 months. You have already had one emergency surgery, you sure don't need any more.

I hope this helps,

Jeff

[RattieLady]

Jeff...
Sorry to hear your ABI didn't work. Mine's great i don't know what i would do without it. When i had the facial nerve corrective surgeoy in may i couldn't wear the abi for a while cos my face and neck swelled up. Their was some distortion but that sorted itself out within days.

[Obita]

Hi RattieLady:

Your story is incredible and you are incredible.  My best to you and anyone with NF2. 

I am here if you need to talk.  Kathy

[RattieLady]

Hi RattieLady:

Your story is incredible and you are incredible.  My best to you and anyone with NF2. 

I am here if you need to talk.  Kathy

Thank you! Everyone on here is incredible i'm not the only one, you are too! It's nice to know i can talk to people who know what i'm going though and i know what everyone else on here is going though. You don't feel along when your on here.

[matti]

Hi Rattielady - Welcome to our family!

 You have been through so much in such a short amount of time, you are truely amazing. We are all here to help you in anyway that we can and if you need a some good laughs, (we find humor very theraputic here) check out the "good morning" thread. It's a long read and gets really about page 20 or so.

Keeping you in my prayers and sending a hug,
Cheryl

[RattieLady]

Thank you. i will check out the good morning thread. You are all great on here, i feel better!

[Survival Nate]

All i can say is WOW  I to never had any problems at all till i was 21yo and i had my MRI I had went to the doctors for 3 years before they gave me a MRI I had the NA out 5 days later the doctors said 3 more weeks and I would have been paralized or dead. ever since then it only one day at a time, and i enjoy every min.

Best Wishs